Wednesday, November 6, 2013


The last few weeks, actually year has been crazy. We did a trial study of a new drug coming called Perampanel. We also started a drug in May 2012 called Potiga. We saw huge success with the combination last November 2012 thru the beginning of the year 2013. Landon made huge strides during this period. Around July the seizures were coming back slowly. Our seizure free periods were short, but we were seeing significantly less seizures. They pulled the study drug and we then stopped Potiga due to Landon's mouth turning black, and major GI issues. A possible side effect from one of them. We attempted klonopin again but Landon cried 24/7 while on it. It didn't seem worth making him miserable! We also gave Onfi another shot but saw increased seizures. He is currently taking lyrica and we are waiting to meet with neurosurgery for his Vagus Nerve Stimulator consult. We are optimistic we will see improvement with seizures. I will keep you posted on his progress through the surgery and during the device increases. 

On a very happy note, Landon has been eating a select number of foods via mouth since March 2012. I may have mentioned this but it is a huge relief! He started eating only snack pack pudding, then he would only eat cool whip. Since then he went through Apple pie, cheesecake, zebra cakes, and sweet potatoes. I am glad to say he is eating 100% of his meals and I only use his g tube for meds and yogurt(since his c diff battle). He recently started eating PB & J, bananas, Cheerios, pancakes, over easy eggs, and bread. We continue to try new things and thank God for each good day.

Thoughts and prayers for all of our friends!

This is Landon after dinner the other night. He was clearly ready for bed! 

My attempt at getting a picture of the fisherman and fish together on Halloween! 


Monday, October 7, 2013

A much overdue post

It has been years since my last post so it may take weeks to update on how our family is doing. Ill start first by saying we have had a lot of life changes. We moved a year ago to get Landon more help, we welcomed his another little boy 6 weeks ago, and Landon continues to amaze us! We are still fighting daily seizures but have had some great things happening. Landon stopped eating by mouth in October 2010, and we finally have been able to get him eating "some" by mouth since March of this year. He is very picky, but finds new things he likes every day! I continue to make food for his g tube to give him the calories he needs. He is also making some great developmental strides! He is soooo close to crawling! He can get into hands and knees but just needs to coordinate and strengthen his arms and he will be off!  We finished all genetic testing available last spring, hence the baby brother. We decided after finding no know cause or reason for Landon's struggle it was time to expand and give Landon a sibling. We are super excited to have our family grow and are adjusting to being a family of 4. 

I hope to finally catch up with all our blogger friends! We hope all is well and pray for all of you!